ADI News

ADI Makes Annual Research Grants to the University of Toledo Medical Center

The ADI made its first grant (in 2015) to the wonderful Dr. Blair Grubb of the University of Toledo Medical Center. We made and will make further yearly additional funding (including in 2019).

Our grants have two intended purposes. The first is to fund research to help improve care options for people with dysautonomia. The second is to try to reduce the plague of delayed correct diagnosis, for people with the disease, by increasing health care provider awareness of its various forms.

Covidien/Medtronic Support Our Research Efforts

Staff, who prefer to remain anonymous, have made multi-year donations to us. These have been matched, by Covidien, which has now been purchased by Medtronic. Medtronic has generously continued the matching grant policy.

Becker Trust Makes Research Grant

Dr. David Becker, of the Newton and Rochelle Becker Charitable Trust, has provided a grant to us, in support of our research efforts. The late Newton Becker had previously provided assistance as to disease awareness and funding efforts in Congress.

Berman Foundation Supports Our Grants to the Mayo Clinic

Our heartfelt thanks, to the Mandell "Bill" & Madeline Berman Foundation, for its matching support for one of our research grants to the Mayo Clinic. The late Mr. Berman has also helped us to advocate for increased federal medical research funding.

ADI Makes Fifteenth Research Grant to Mayo Clinic

In 2018 we will make our fifteenth research grant to the dysautonomia treatment section of the Mayo Clinic. In addition to first recognizing dysautonomia, in adults in 1993, Mayo physicians actively provide care to people with the disease, teach other physicians about the condition, and are at the forefront of efforts to find more effective treatment.

Leaders of this ongoing research include Mayo Clinic's Dr. Philip Fischer and Dr. Wolfgang Singer. These physicians, and their associates, are speaking at medical conferences and publishing medical journal articles regarding dysautonomia. All of these efforts are significant steps on the long road to more widespread prompt diagnosis of dysautonomia and improved medical care options.

We appreciate the credit, given to our funding, in Mayo Clinic research journal articles and on audio-visual displays at continuing education presentations.

Our Sixth Research Grant to the Medical College of Wisconsin

In 2018 we will make our sixth research grant to the Medical College of Wisconsin. We look forward to working, with its dysautonomia treatment and research staff, including the wonderful Dr. Thomas Chelimsky. Our funds have been used to produce a video, about diagnosing dysautonomia, for health care providers. We have committed to making a further grant in 2019.

FDA Approves New Drug

The Food and Drug Administration has approved a new drug, Droxidopa, to treat neurogenic orthostatic hypotension, Many doctors and nonprofits provided input and support to obtain this approval.

We were gratified to report that, in response to our requests and recommendations, we were contacted by a researcher at the Centers for Disease Control and Prevention (CDC). The CDC agreed to the importance of updating web based information, and its continuing medical education program, to provide diagnostic and treatment information about dysautonomia.

Moreover we are hopeful, that the fact that many people diagnosed with chronic fatigue syndrome actually have a form of dysautonomia, will be further relayed to health care providers by the CDC.

The CDC has indicated that it will work with the adult and children's dysautonomia research/treatment sections at the Mayo Clinic. It also stated that it will offer a continuing education course, noting that many people diagnosed with chronic fatigue syndrome (CFS) actually have a form of dysautonomia. This is much appreciated and a positive step towards correct diagnosis.

At the same time, we have recommended a specific health alert, stating that at least 25% of people diagnosed with CFS actually have dysautonomia. In this regard, on January 6, 2012, a CDC representative stated that one to four million Americans have CFS.

On a related note, we hope that other federal agencies will become more aggressive as to using no cost electronic notifications, to health care providers, as to the number of people who have dysautonomia, but have been misdiagnosed as having other physical conditions.

A continuing issue, as to increasing more prompt correct diagnosis, is the fact that dysautonomia is not covered in medical school or psychology graduate school curriculums, while it is covered in vet. school.

Progress At The National Institutes of Health

After five years of interplay with the National Institutes of Health (NIH), we received three significant, and much appreciated, letters from it. One, from the director of one of its divisions, the National Institute of Neurological Disorders and Strokes, reflects, for the first time from a high level NIH official, that millions of Americans have forms of dysautonomia. This comment is a major step towards increasing disease awareness and justifying a more equitable research budget.

Moreover, although the research expenditure accounting, at the National Institutes of Health (NIH), could be somewhat more transparent (in terms of disclosing specific research spending for dysautonomia) the prior acting director (now deputy director) of the NIH advised that some of the research protocols, for which we have been advocating, have received some funding.

Accordingly, we thank the deputy director (previously acting director) of the NIH for his kindness, patience, and follow through as to our inquiries and advocacy.

Additionally, the National Library of Medicine has gradually been updating medical subject headings following some of our recommendations. It has agreed, according to its deputy director, to adopt more of our database update suggestions to make information, about the types of dysautonomia, more easily accessible. It is also crucial to distinguish dysautonomia from familial dysautonomia. Accordingly, we express our gratitude to the National Library of Medicine, including its deputy director.

Furthermore, extrapolating from the past testimony of NIH researchers, plus physicians who spoke at the 2002 Joint Congressional Dysautonomia Information Hearing, over 1.5 billion dollars (in 2002 dollars) is wasted each year in misdiagnosing and mistreating forms of non-familial dysautonomia. In this regard, correspondence from the National Institutes of Health gives us increased hope, that over the next few years, this wasted amount of money will be reduced and more prompt correct diagnosis will increase.

Accordingly, our heartfelt thanks for the material that we received from the then acting director of the National Institutes of Health (Raynard Kington, M.D. Ph.D,) the director of the National Institutes of Neurological Disorders and Stroke (Dr. Story Landis), and the deputy director of the National Library of Medicine. By the way, with the appointment of a new director of the National Institutes of Health, we are fortunate that Dr. Kington has resumed his position as its deputy director.

Mayo Clinic Researchers Confirm That Many People Diagnosed with Chronic Fatigue Syndrome Have a Form of Dysautonomia

.......Postural orthostatic tachycardia syndrome is increasingly recognized as a significant factor associated with chronic fatigue, particularly in adolescents. As many of 25-50% of adult patients with chronic fatigue syndrome demonstrate evidence of autonomic dysfunction, including postural orthostatic tachycardia syndrome [15]. Patients with chronic fatigue syndrome were also noted to manifest abnormal thermoregulatory responses of the skin, both at rest and with skin cooling [16]. (p. 79) ........................................................................................ The recognition of postural orthostatic tachycardia syndrome derived from a subset of adult patients who carried a diagnosis of orthostatic intolerance, but who also exhibited an abnormal heart-rate response to a positional change. Postural orthostatic tachycardia syndrome was first reported in adolescents in 1999 by Stewart et al. [4], and affects millions of Americans, particularly young women [5] [emphasis added]. (p. 75) *Johnson J, Mack, J, Kuntz N, et.al. postural orthostatic tachycardia syndrome: a clinical review. Pediatric Neurology 2010;42(2):77-85.42(2):77-85.

To summarize, large numbers of people diagnosed with chronic fatigue syndrome have a form of non-familial dysautonomia. Accurate diagnosis is necessary for the correct treatment to be rendered.

Macomb County Michigan Funds ADI

Macomb County, Michigan (the states third largest county) designated April, 2013 as American Dysautonomia Institute month. All casual day donations for the month, made by county employees in all departments, were sent to the ADI. This is the second time that Macomb County has so honored us and provided financial support.

Wal-Mart Supports Increasing Health Care Provider Awareness of the Many Types of Dysautonomia

Secondary to a generous grant from Wal-Mart, we were able to edit, publish, and distribute a limited edition edited book, intended for physicians, to help with the diagnosis and treatment of the multiple types of dysautonomia.

Wal-Mart's assistance will help reduce misdiagnosis and hasten the administration of the limited care options available for people with dysautonomia. Thank you Wal-Mart!

United States Financial Downturn Endangered Medical Research Funding

Hundreds of billions of dollars, pledged by the federal government to stem the 2008 federal economic disaster, made unclear the situation as to long term funding restoration needed due to prior federal research cuts to the National Institutes of Health (NIH). However, as part of a past stimulus package, President Obama increased the research budget at the National Institutes of Health. This supplemental appropriation, to the NIH, was a step in the right direction.

The aggressive efforts towards recovery of our country's financial health, made by President Obama and Congress, are appreciated. On the other hand, President Trump favors permanently reducing the budget of the National Institutes of Health, jeopardizing the well being and hopes for improved medical care as to all Americans.

More on the National Library of Medicine Updating Research Databases At Our Request

Using some of the grant funds that we received from the Serling Philanthropic Foundation, we made repeated and specific proposals to the National Library of Medicine to make searching for information, about non-familial dysautonomia, easier. We recommended that major forms of dysautonomia be cross-referenced and distinguished from familial dysautonomia.

In the past, some of our proposals have been adopted. Moreover, with the assistance of the acting director of the National Institutes of Health, in July 2009 we were advised (by the deputy director of the National Library of Medicine) that more of our suggestions will be adopted. In this regard, we know from contacts with physicians, and efforts by our research librarians, that finding authoritative material about the types and symptoms of non-familial dysautonomia can still be difficult. However, we appreciate the remedial actions taken, and proposed, by the National Library of Medicine (NLM).

It is crucially important that the NLM (a division of the National Institutes of Health) help lead the way in making information more accessible as to how to diagnose dysautonomia, including its various sub-types.

Our heartfelt thanks, to the Michael and Elaine Serling Philanthropic Foundation, for its totally unexpected grant to us. We also gratefully appreciate Ms. Dana Serling's nominating us for consideration.

We have used the funds, among other projects, to work with the National Library of Medicine to add types of dysautonomia as a formal research subject headings, with cross-references to the various forms of the disease.

Secondary to the help of the Serling Philanthropic Foundation, the MedlinePlus database (part of the National Library of Medicine) has been and will be further updated as to the different forms of dysautonomia.

American Dysautonomia Institute Makes Research Grant To National Institutes of Health

In 2009/2010 our organization made its first grant, for dysautonomia research and increasing health care provider disease awareness, to the NINDS division of the National Institutes of Health. We appreciate the NINDS division and National Institutes of Health providing us with updates as to research and educational activities related to dysautonomia.

Founder of Popular Children's Group Diagnosed with Non-Familial Dysautonomia

In November, 2006 Greg Page, a founding member of the internationally popular Australian children's group, The Wiggles, announced that he stopped performing due to orthostatic intolerance (a type of dysautonomia).

Mr. Page, the wonderful original yellow Wiggle, is pictured at left. His public comments, about non-familial dysautonomia, will go a long way towards increasing public and health care provider awareness of the existence of the disease. It is growing, for reasons not fully understood, at a rate faster than autism.

Mr. Page improved, sufficiently, to be able to return to The Wiggles. He thereafter retired in 2012.

Over Three Million Americans Have Non-Familial Dysautonomia

In 2002 the number of Americans, with dysautonomia, was estimated at about one million. However, researchers at the Mayo Clinic (supported by colleagues at other medical centers and the director of one of the National Institutes of Health) now confirm that over three million Americans have the disease.

Moreover, many people diagnosed with migraine headaches, irritable bowel syndrome, or "chronic fatigue syndrome" may have the autonomic nervous system disorder dysautonomia. In terms of fatigue, it can be related to abnormal blood pressure/vascular control/heart rate issues as to changes in position. These are the orthostatic intolerance or postural orthostatic tachycardia syndrome (POTS) types of dysautonomia. However, blood pressure readings can be normal, taken in either arm, while blood pressure to the brain and other internal organs is insufficient due to the dysautonomia caused inability of blood vessels to properly expand and contract with changes in position. Similarly, heart rates may sometimes be normal, even though a person in fact has POTS.

Accordingly, it is very important to take repeated blood pressure readings (in different body positions) and have a tilt table test performed and interpreted by a physician familiar with dysautonomia. In this regard, the leading cause of blood pressure control problems, after essential hypertension, is dysautonomia caused orthostatic hypotension. Orthostatic hypotension can manifest itself in a variety of symptoms, including fatigue, headaches, pooling of blood in the legs, and gray outs.

The Wall Street Journal, as late as March, 2011, has published articles about chronic fatigue syndrome. The last two articles do not mention that it is undisputed that many people diagnosed with chronic fatigue syndrome actually have dysautonomia. Moreover, dysautonomia has multiple potential viral triggers, far more than are suspected as to chronic fatigue syndrome.

Congress Supports Increased Autism Funding

The ADI applauds those members of Congress who have voted for large increases in funding for autism awareness and research. This much needed legislation is a refreshing contrast, to the statements of some Representatives and Senators, that they will not tell the National Institutes of Health on what conditions to spend money.

As to this situation, when the number of people with a specific disease grows at a plague-like pace, special Congressional attention is certainly justified. Dysautonomia is tragically growing faster, we believe, than autism. However, dysautonomia research funding was cut several times prior to 2009. We pessimistically look forward to the 2018 session of Congress further addressing this federal medical research crisis. On the other hand, we are grateful for the National Institutes of Health's increased awareness of the need to assist people with forms of dysautonomia.

In the interim, we compliment those members of Congress who voted for increased autism funding and supported an autism postage stamp. The postage stamp is an excellent way to increase disease awareness.